Wednesday, September 17, 2014 – Day 305 after leukemia diagnosis – Pre Transplant

Today is the day that Kevin starts his NEW TKI (tyrosine-kinase inhibitor), aka: chemotherapy treatment, Bouslif (Bosutinib) – Say THAT three times fast!

This is the third TKI that he has had the pleasure of taking and I haven’t even mastered the pronunciation of the last TKI he was just switched from, Tasigna (Nilotinib). The first one, Gleevec (Imatinib) was much easier to learn and pronounce, but it didn’t work the way it was supposed to either. The truth is the doctors, including a top CML Specialist believe that Kevin’s CML because is resistant to all of the TKIs available thanks to the double Ph Chromosome that reared its ugly head in the last bone marrow tests. The TKIs DO keep his WBCs (white blood cells) under control for an uncertain amount of time, so he is taking Bouslif with hopes that the severe side effects he experienced with Tasigna will be alleviated. This is a temporary plan of action until a suitable stem cell transplant donor is found. But like I said in my last blog, I will be challenging and questioning the plan of action.

Hopefully taking this new TKI will make the road to transplant a teeny tiny bit easier to handle – side effect wise. Kevin does need to have 1 ECG per week for the next 4 weeks just to monitor his heart. He did the first one yesterday. That sucks because the more times we need to hit the hospital, the more times he is exposed to nasty infections. I don’t understand why they are doing these ECGs since heart issues are not listed as a side effect of this TKI. Perhaps the ECGs have nothing to do with the treatment and they are actually part of the pre-transplant process. Another question I SHOULD have asked, but didn’t. My brain is a little exhausted. But we just gotta do what we are told he’s gotta do and keep hoping for the best and brace ourselves for the worst.

Tomorrow we have an appointment with our family doctor to talk about Kevin’s anxiety. His blood pressure shot up to 200/110 when we received the bad news from the specialist. He suggested that we ask our doctor for some anti-anxiety meds to help Kevin remain relatively calm during this process so he doesn’t suffer from a stroke. When his nurse checked him today, he was 172/84. Not AS high, but still high. But how do you tell a man that is facing a stem cell transplant to calm the hell down? You can say it till your blue in the face, but it’s not going to happen. All we can do is keep telling him he’s going to get through this and keep going!

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